Wednesday, December 31, 2008

This week has been exhausting! Monday I went in for my weekly routine sonogram and the doctor told me that they would not be doing an amnio on the 5th. He said he would decide that day whether or not from the sonogram findings if they would be doing the c-section that day or waiting until the 12th. So I got a little frustrated, I was hoping that since she was 37 weeks they would go ahead and deliver her. I also don't like the fact that Monday when I go into the doctor I will not know whether I'm staying or going home. They also were not able to give me a measurement of her head. They said it was "out of range"? Her average weekly increase has gone up. So this too bothers me alot.Well...that night I started having some pretty painful contractions every 3 to 4 minutes. After a couple hours of this I decided to go ahead and go in to the hospital, which was about 10:00p.m. I continued to have these contractions throughout the night into the morning even though they were giving me medicine to try and stop them. They gave me some medicine for the pain and to help me sleep, but it just was not working for me. Since I was not dilating they did not consider me to be in active labor. I was given the option the next morning to stay in the hospital until I had her or go home. I chose to come home. So Tuesday I literally slept all day. lol. I was so exhausted!! Today I had an apt. with my ob doctor and still have not dilated, but still have the contractions, just not as regular or as painful.Well I wish everyone a safe and happy New Year! I am probably going to fall asleep pretty soon. So much for being awake to ring in the new year!! lol.

Saturday, December 27, 2008

I have not updated in awhile. I have been so busy with Christmas, work, doctor appointments, and family. Time is going by so fast!!Well, at my last sonogram the doctor said he would like to check for lung maturity on Jan 5th instead of waiting until the 12th. He said that her head size and ventricles are increasing at a more rapid pace. She was about 7lbs as of last week. This Monday I will have another sonogram, so I am really praying that things slowed down a bit, and maybe she had just hit a growth spurt or something. She has not been near as active as she use to be. But maybe she is running out of room. On the 5th they will do the amnio and if she is good to go, they will do the c-section on the 6th.Today we went and bought a few more last minute items. I also washed her clothes and put the rest of her things away. Everything was in bags in the living room. lol. I finally got the energy today, but am paying for it all now. I can barely move. I am getting so miserable. But not much longer. I will probably post before I have her, but if not I will be sure to post pictures as soon as I can!!

Monday, December 8, 2008

Today I am 33w3d. I am now scheduled to have sonograms once a week until her delivery. I had a sonogram today and her vent size is now averaging 32mm on right and left, 3rd ventricle is 11mm. Her head size is at 39w5d. She weights 5lbs 13oz. I am guessing she is gonna be a big little girl. The doctor said her assigned gestational size by sonogram is 36w. Maybe I am just a big baby but getting up to do anything is painful. Lol. I still have 5weeks too!!! Maybe they will take her a bit sooner so long as her lungs are mature. We don't want to have other obstacles for Miss Bryleigh to overcome!I had my baby shower on Sunday. We got pretty much everything we needed. Of course I am not done :-). There is still some things that I want. I still haven't started on her room yet. I will get to that as soon as Michael fixes a few things.I also had my tour of the NICU last Wednesday. It went really good. I am so glad that I got to do that. It really helps seeing where your baby will be staying, and them going over the process of delivery, etc with you. I was told that she would be having a surgery within 24 hours to fix the cephalocele on her head. They did tell me that they had never see one as small as hers. This is great news. We love hearing good news!! They said that she would probably require a shunt, but that would be scheduled within her first week after birth. The doctors are very encouraging about everything. I am so excited and nervous. We just have to keep praying for her. The closer I get the more excited I am getting. I know this is normal, but I have had a hard time being excited throughout the whole pregnancy (since I found out about her condition) especially with some discouraging doctor visits, etc. But now that I have a better understanding of everything, and we are getting close, I am very excited!!

Tuesday, December 2, 2008

Well not much has happened since my last post. We are still waiting on the arrival of Miss Bryleigh. I only have a little over 5 weeks. Getting so close!! I had a sonogram last Monday and her head size is still measuring 4 weeks ahead of her gestational age. She was about 4.5lbs. Her ventricles are averaging 30mm on the left and right. And her 3rd ventricle is about 7mm. She seems to average an increase of about 6mm a month on her left and right. I have started meeting with my OB doctor every two weeks, and my sonogram doctor every two weeks. My next sonogram is Monday. My doctors still want to stick with January 12th as her delivery date. I am already so uncomfortable at times. I don't remember all this with my son Tyler, of course I worked out through the whole pregnancy, whereas this one I haven't ;-). Tomorrow I go for a tour of the NICU and meet with a neonatal doctor. I thought this would be beneficial so that we will have some what of an idea what to expect after she is born (I'm getting very nervous). She is a very active little girl already. She is constantly moving and kicking. She really starts when I lay down on my back at night.

Tyler is getting very excited about becoming a big brother. He looks at my belly and I ask him if he likes mommy's big belly, he tells me he just loves Bryleigh. He had his head laying on my stomach the other day and he could feel her kicking. It was so cute, he got so excited.

I can not believe its already Christmas time. We have not started our shopping. I will probably start this weekend. I feel like we have so much going on, but it does help keep my mind off of things. I also am having my baby shower Sunday. We still need to start on her room. So I have plenty to keep my busy until the time comes.

Monday, November 10, 2008

I started this blog in hopes to help other mothers who may be going through the same thing and for my family and friends who may want to follow our story. I have yet to face the hard part of dealing with everything first hand as I am still pregnant. But I figured posting about our journey with hydrocephalus I may be able to provide some reassurance or help to other mothers going through this as well. I have found many of the blogs helpful and would like to contribute what I can to others.

Me and my fiance (Michael) went in to my perinatal doctor to find out what we would be having. During the sonogram the doctor took all the measurements without saying much. He ended the sonogram and told us the bad news first then the good news. Well the good news was that we were having a little girl!! The bad news was that she appeared to have spinabifida and a Chiari malformation. An amnio was performed that day to see if there were any problems genetically (two weeks later we received the results and there were none)We were then sent over to meet with my regular OB doctor. She was very persistent on terminating the pregnancy saying she has multiple problems and that things did not look good for her outcome. We knew we would not be choosing this option. If God gave us this little girl and she was still living she was doing so for a reason. We asked her to send us to a different perinatal doctor for a second opinion. Her words were "He is the best, you do not need a second opinion". With that we were sent home.Well needless to say I was not satisfied. We found a perinatal doctor on our own and had an appointment with him within a week. He was alot more thorough during the sonogram. He explained things much better than the first doctor. He did not see any sign of spinabifida. However he did see a small cephalocele on the back of her head (very small did not contain brain tissue). Her ventricles were enlarged and she appeared to have a Chiari Malformation.I have since had many sonograms as well as a fetal MRI. It has been concluded that Bryleigh has hydrocephalus, a small cephalocele on the back of her head, and Arnold Chiari Malformation II. Normally with the ACMII and the hydrocephalus, babies do have spinabifida, Bryleigh does not. At my last sonogram I was 27w3d her ventricles were measuring at 23mm and her head size was measuring 31w (4 weeks ahead). Bryleigh will likely have a shunt placed following her birth to releive the pressure caused by the hydrocephalus. My OB doctor (I have switched) has my c-section date scheduled for January 12th, 2009. My original due date was January 23rd, 2009.

We are going to be preserving her cord blood at birth and plan on having her infused within a month after birth at Duke University in NC. This is not a proven method but it is believed to restore some cognitive brain functionality. We will have to travel along ways but I believe it is worth it if it can possibly help our little girl in any way. I learned about this by researching on the internet and I came across a great site http://www.fetalhydrocephalus.com/hydro/Infusions-1.aspx.

We just pray everyday that everything will work out for our little girl. She is our little miracle and we cannot wait to welcome her into this world.

About Me

Bryleigh is a beautiful little princess who was diagnosed with congenital hydrocephalus, an encephalocele, absent septum pellucidum, and thinned corpus callosum. She has had two surgeries and is doing awesome! We are so thankful and proud of her! We welcome everyone to read about her journey!